If someone in your family has just received a diagnosis of PWS, we in PWSAI would be delighted to help you in any way we can.
We’re happy you have found us. PWSAI is an organisation here to support people with PWS, their parents and carers. Most people have never heard of PWS when they receive the diagnosis for their child. We can answer any questions you might have and more importantly give you hope for the future.
A message from Emma, whose son was born in 2012
“My son Henry was diagnosed with PWS at just two weeks old. I still remember feeling lost as we were handed one page with a link to a medical site that described PWS. We were advised to stay away from google but we weren’t given any other information, so we googled and cried.
I wish I could go back now and tell myself that the future is bright and that the good days would far out weigh any bad ones. Henry really doesn’t let PWS hold him back.
PWS is rare but here in Ireland, we have a wonderful community, that are happy to support other families. You may want to reach out now or in a few months, whenever you are ready, make that call or email. You won’t regret it.
When Henry was one year old, we met with other families for the first time. We got so much hope from that meeting and realised that the bleak future we imagined was very far from reality.
If there’s any unanswered questions or you’d just like to talk, don’t hesitate to get in touch.”
PWSAI organise regular conferences and family support events, which you would be very welcome to attend. We have a very active Facebook page, which we use to share news and keep in touch. If your child has recently been diagnosed with Prader-Willi Syndrome and you would like more information or just to chat to another parent you can contact PWSAI by contacting The PWSAI Family Liason Ann O’Neill on email@example.com or phone Ann on 087 2522832. You can email the secretary at firstname.lastname@example.org or you can also contact PWSAI via Facebook.
We also recommend you watch the following New Diagnosis film, which PWSAI released in late 2014:
Other films in this series that you may be interested in are:
- Growth Hormone Therapy in Prader-Willi Syndrome
- Dietary Management in Prader-Willi Syndrome
- Therapeutic Interventions for the Young Child with PWS
If you are interested in finding out about financial supports that you may be entitled to please see this document [Version: March 2016].
If you are interested in an overview of health issues associated with PWS in young children and medical supports typically required please see this document.
If your baby is still in hospital please see this 2013 resource from PWSA USA:
As you may have already discovered, there is a lot of information about PWS available online! However, many internet resources offer contradictory messages about what PWS is or might mean for an affected individual or their family. Many more are outdated and tell stories of how PWS appears to have affected some individuals before early diagnosis and current medical and therapeutic interventions became common. If you are looking for information in relation to specific aspects of PWS please contact us and we will try to direct you to the most relevant and up to date publications.
Hope to hear from you soon!